Friday, March 30, 2012

Fear Factor

I'm scared.

There, I said it.

Actually, the word "scared" hardly suffices; I guess "terrified" would more fit the bill. Fear in copious amounts might as well be listed as one of the symptoms of MS. I've talked and corresponded with hundreds of MS patients, on topics ranging from treatment options to conjecture about the nature of the disease to the day-to-day strategies we employ to simply get by, and though it's often unspoken, all of these interactions share one inexorable feature: an undercurrent of fear, at times more prominent than others, but even at its quietest, always present.

Multiple sclerosis is a diagnosis brimming with frightening features. Before getting sick, most of us had only cursory experiences inside the world of modern medicine. We'd get the flu or suffer an injury, make the obligatory trip to the doctor’s office or emergency room, and after a period of days or perhaps weeks our association with doctors and nurses would come to an abrupt and welcomed end, the arc of our lives resuming their previous trajectories. Getting hit with the diagnosis of a chronic and serious illness, though, transforms us from occasional patients to perpetual ones, and throws some nasty curves into the course of our lives. Quite suddenly we are faced with a Pandora's box of terror, which once opened spews forth a never ending stream of reasons to be frightened. From diagnostic tests to treatment options to uncertain futures, we are bombarded with physical and psychological body blows that sometimes literally leave us breathless.

When I was going through the diagnostic process, I expected that at some point there would be answers. Someone would tell me what exactly was happening to me and how to fix it. After all, it seemed that every day, on television and in newspapers, I was delightfully infomed of one momentous medical breakthrough after another, a steady stream of scientific miracles brought forth by the shiny whiz-bang machine of modern medicine. But once I found myself a reluctant resident inside that machine, entangled in it like a fly in a web, it quickly became apparent that despite all of the fancy gizmos and sometimes impenetrable terminology, there wasn't all that much substance to hold onto. Instead of concrete answers I was offered a fusillade of "I don't knows"and "We're not sure's", all delivered in a rather self-assured manner that was completely at odds with what was being said.

Although I somehow managed to maintain an outward demeanor of rationality, inside my mind reeled with the gradual realization that all those people in white coats very often more resembled the gang that couldn't shoot straight than the intricately synchronized and intellectually enlightened medical gurus whose image popular culture had propagated all these years. I felt lied to and cast adrift, not by any individual but by the system as a whole. How else is one supposed to feel when told that the only treatments available for a disease whose cause is a complete unknown were drugs whose methods of action were equally as mysterious. In the parlance of the 21st century, WTF?

Since I have progressive disease, I can only imagine the fears and anxieties that go along with the relapsing remitting flavor of MS, not knowing when going to bed whether or not your body will be functioning come the next morning. Might you wake up temporarily blind? Unable to stand? A quadriplegic? I am intimately acquainted, though, with the unholy terror of watching yourself slowly get whittled away, gradually withering on the vine as, quite consciously, the losses just continue mount. I first noticed a slight limp in my right leg almost exactly 9 years ago. Since then I've looked on in horror as that leg slowly became useless, even as my right arm and hand followed its example. Now my left arm and leg are mimicking their right sided brethren, and though internally I scream for them to stop, they appear to be intent on enacting a repeat performance, like a good child turned bad by a naughty friend. I've already watched this movie once, and I really didn't like the way it ended. Fortunately, when my right side eventually reached the point of complete incompetence, my left side was there to take up some of the slack. Now that the left side is going, well, let's just say that if I don't figure out how to grow another arm and leg, the situation might get a tad bit ugly.

What demonoid could come up with such a disease, a fiendish thing that forces you to watch yourself disappear but then doesn't have the good manners to finish you off? One of my greatest fears as a youngster, having been eleven years old when the film Jaws came out, was being eaten by a shark. Well, now I am being eaten by a shark, only it's invisible, takes its good time, and somehow lives inside me. And it's a hungry fucker, seemingly insatiable. As Sheriff Brody says in Jaws, after catching a glimpse of the huge man eater in the water, "We're going to need a bigger boat!" Problem is, none of the well-intentioned shark hunters in the white coats seems to have a clue as to where I can find myself a bigger boat. In truth, they haven't even been able to throw me a life preserver. There are no known effective treatments for progressive disease, and even the new wave of treatments now available to treat RRMS are rife with the specter of horrific side effects, bringing with them, along with their increased efficacy and hope for relief, all new reasons to be terrified.

I am constantly amazed at the courage displayed by my fellow patients. Faced with a potentially paralyzing disease, and with it a terror that can be just as paralyzing, we persevere, channeling all of that raw emotion into life, wonderful, glorious, crazy, mixed up life. Despite days when the simplest of tasks seems insurmountable, we forge ahead, maintaining whatever semblance of normalcy we can cobble together, constantly making the adjustments necessary to navigate an increasingly difficult landscape. Through the Internet and in person, we reach out to each other, offering advice, comfort, and often just the knowledge that there are others out there like us, dealing with similar hardships and plowing through the dread only a fellow sufferer can know. I've seen the emotions engendered by MS turned into incredible pieces of visual art and tremendously moving poetry and prose, all loudly expressing that we are here despite the fear, and though physically diminished our spirits remain defiant.

Sheer terror can be an energizing force, as the medical world is learning through the tremendously transformational patient advocacy being done on behalf of CCSVI research, a movement whose spirited core is animated not only by the horror of the damage the disease may wreak, but also at a dogmatic medical profession that seems stuck in neutral, unable to give up on theories that are treated as fact despite there being little or no evidence to back them. Faced with terror at what is happening to them and frustration with the inability of anybody to do anything about it, patients are educating and liberating themselves, and by doing so becoming a powerful force of self advocacy. CCSVI may or may not prove to be the turning point we fervently wish for, the jury is still out, but at the very least the patient movement behind the CCSVI tsunami has flipped the traditional patient-doctor relationship on its head, and no longer will patients placidly accept answers that simply don't make sense. It is the terror born of the disease that has emboldened patients, and all of that focused energy has shaken the walls of a medical establishment that too often puts profits ahead of people, a situation that we the terrorized will plainly stand for no longer.

In the end, when faced with a reality that the "healthy you" would have found just about unimaginable, terror is a completely rational reaction. There can be no denying it, and though sometimes it is felt more keenly than others, it is our constant companion, worn as a second skin, permeating all that we do. But terror need not be a solely negative force. As with all things in nature, the darkness of fear is accompanied by the light of courageousness, as is demonstrated every day by those of us who by sheer power of will make it through another stanza in the face of pain, weakness, and frustration, more often than not speaking nary a word of the terror within. Sometimes we cry, sometimes we scream, but most of the time we just go about our business as best we can, and that may be the most courageous act of them all.

40 comments:

Written straight from the heart (& of so many!). I especially applaud the recognition of patient self-advocasy, no longer placidly accepting answers that don't make sense. The technology of the internet enabling people to self-educate has helped more people (in Canada anyway), than our current so called Medical system! Keep going and keep strong WC KK.

Thanks for your reply and for the well wishes. Right back at you. The technology of the Internet is indeed an incredibly empowering force, and has also put a dent in the overwhelming isolation patients must have felt before they could reach out and find each other through the ether. How terribly lonely it must have felt to be diagnosed with MS 20 years ago.

I can't respond to the claim of terror in regards to the disabiling feature of MS; I just assume the worst and, actually, once I did that, acceptance made a big difference. Sadness, yes. Continually mourning, yes. Terror, no, not from that aspect.

My terror comes with the stories of caregivers that aren't really very caring. Thinking that one day I could well be immobilized and dependent on the kindness of others for *everything* - now that terrifies me. The thought of bedsores, of being unable to communicate, of having no choices..."What demonoid could come up with such a disease, a fiendish thing that forces you to watch yourself disappear but then doesn't have the good manners to finish you off?" - yeah, THAT'S my terror.

Acceptance is a huge step towards maintaining some equilibrium, but the problem is that it's hard to accept losses that have not yet happened, and I find that there is little time to mourn what has already been lost due to the anticipation of what might soon be lost.

The fear of being stuck helpless and at the mercy of caregivers can be overwhelming, especially in the face of so many horror stories regarding patients mired in that predicament. Although it's best not to dwell too much on the future, I think it's important for patients to make some vital decisions before they descend into a position over which they are completely powerless. Perhaps that's fodder for a future blog post, one that I'm sure would cause a ruckus…

As usual, courageous truth written by you for those who have no voice or are not ALLOWED to voicethis fear. And, for me, as a mom watching this MS devour my son, the same thoughts. I wish this truth could be relayed to the people who just do not "get" what MS does to a person...and who use every excuse in the book to discard them and their feelings.

Unfortunately, the plain fact is that, when put to the test, some human beings simply suck. It's one thing to abandon a sinking ship, but there's no need to inflict more damage on the way out.

The role of the caretaker is a tricky one, and all too often a thankless one at that. Those of us with people who remain devoted despite our troubles are fortunate beyond belief, and those who find themselves discarded, as far too many do, must try extra hard not to perceive the failure as their own. Those struck with illness have no escape from it, but the people in their orbit may decide to escape from the gravity of the disease. Not a pleasant truth, but a truth nonetheless…

I lived through the "terror" of being relapsing/remitting from 1990 - 1993 and fortunately I made it through the suicidal thoughts, becoming secondary/progressive in '93/'94. It took a long time though to get past the R/R fears, still never being certain that I wouldn't have another "attack" like I had when I woke up and couldn't get out of bed to make it to the bathroom by myself--or worse! Now, after having had venous angioplasty for CCSVI, my biggest fear is re-stenosing--nowhere near as frightening!

You responded to some comments I made in the past, but I never got a response when I replied to you about my first visit to my neurologist since my treatment. The March 8, 2012 visit went extremely well and he was happy to see me walk into the examining room without assistance. For about 20 years, I couldn't walk (or even stand for any length of time) without hanging onto something. Although he said I was the "exception" among his patients who had the treatment--he couldn't "see" any improvements with them, they only "said" they "felt better"--but with me he could see physical evidence and that I was "SIGNIFICANTLY better". That's pretty incredible since I was only supposed to deteriorate! He let us video record the neurological exam and I included some of it in my "1-year angioversary" video--I hope you can see it. http://www.youtube.com/watch?v=9BNL42wcFLE&feature=youtu.be

Hi Lori, sorry for my lack of response to your earlier post, I could've sworn I had responded. Between e-mails and comments, sometimes it's hard for me to keep up.

That said, I love your video. Kudos to your neurologist for allowing you to video your neurologic examination, and record his comments afterwards. I'm going to forward your link to my own neurologist, who also has many patients who have had the procedure, but has only been able to slight discern improvements in a few.

Unfortunately, as you know, results as positive and long-lasting as yours seem to be somewhat the exception rather than the rule when it comes to CCSVI treatment. Much of the reported outcome info indicates that those with early RRMS fare better than those who have had the disease for a longer duration, or who have progressive illness. Even for those who to experience benefit, the problem of restenosis all too often rears its ugly head. Nevertheless, you are a shining example of why CCSVI offers real hope to patients who previously had little to hang their hats on. As the science progresses, hopefully we will get some hard data upon which to base treatment decisions, and the treatment protocol itself will be standardized and perfected.

Thanks so much for your contributions, and again I'm sorry for my previous lack of response.

I have had MS since 1972. Secondary progressive for some years and aggressively going down hill. 10/12/10 liberation treatment Stopped decline and I continue to improve beyond 10/12 /10 physically and cognitively. Functional PT and strength training( as per MS -no straining no sweating and no heating up-) has been essential to the improvements, IR and neurologist strongly agree. Getting back function requires engagement, in order to creates new pathways within our brain, and activate muscle memory. I think we need to discuss more about what we can do due post procedure.Kamikazie, the last I read was that you were unable to get liberation treatment. Any changes?

Another superbly insightful piece! I am moved to tears by the truth of it. Thank you!

And Sue W., I agree with you that the specter of one day being dependent on caretakers who might not be as kind and loving as my partner, who at present cares for me with extraordinary patience and kindness, is terrifying.

Thanks prof, it's unfortunate that the truth about what we are all living through is worthy of tears, but I'd rather face the truth than live in a state of denial.

The dark at the end of the tunnel is indeed a terrifying prospect. We can only do our best make the most out of now, and as for the future, hope for the best but plan for the worst, as unpleasant a process as that may be.

GREAT POST MARC...WONDERED IF IT HAD ANYHING TO DO WITH ALL THE TIMES IVE CALLED YOU WALLOWING LIKE A CHILD CAUGHT IN A MANS BODY THATS SCARED TO DEATH...WITH YOUR PERMISSION NAD INSPIRATION I MAY EXTEND SOME THOUGHTS ON MY POST..WWW.THEGREEKFROMDETROIT

Greek-you're no child, and admitting your fears takes more courage than denying them. Please, do use whatever inspiration I can give you to express yourself, as we all have a unique voice.

Judy-as always, I find your poetic interpretations of my prose to be quite a compliment. The fact that you can distill the feelings that take me paragraphs to convey in so few words is a terrific talent, and thank you so much for sharing it.

Anonymous-thank you, it's good to know that some caretakers are reading the blog, as I know it can be hard for patients to divulge what they're feeling to those closest to them.

How ironic, Marc, that when I got up to go the bathroom at 6 AM today I found that I could barely move. It wasn't due to heat, which will do that to me; rather, I apparently had succumbed to getting a cold. I haven't been "sick" in years! Now this is what it does to me: It totally wipes me out. And for possibly the first time ever, though it has remained unspoken for 30 years, I said aloud, "I'm scared."

Fortunately for me, my cold is abating a bit, and my movements are moderately improving, but perhaps for the first time I have seen my future with my eyes wide open.

Yikes, sorry to hear about your early-morning troubles. Any time I pick up the slightest bug my symptoms careen out of control. It's almost as if any added physical stress acts as a multiplier on our underlying disease. And believe me, I know how scary it can be to get a "sneak preview" of what may be lurking somewhere down the line…

I've silently followed this blog for some time now. I seldom post online, but this pulled me out of my shadowy corner.

I've been terrified since October 2005, when I lost all feeling in my left cheek, a loss which spread across the majority of the left side of my face, and into my mouth (where I spent most of a year unable to truly taste food). I was terrified as words such as 'tumor' were tossed about by my GP and my new Neuro. I was terrified when they finalized my diagnosis as 'Primary Progressive MS' a few months later.

Then I lost my original Neuro. My second Neuro literally could not spare more than 3 minutes every 6 months to speak to me during my office visits, despite my having to wait over 3 hours to see him each time- he didn't have the time for me or the interest in hearing a single word I had to say. My third (and current) Neuro re-diagnosed me to Relapsing Remitting MS after I pointed out that I believe that was the proper diagnosis, since I'd had (and mainly recovered from) several exacerbations by the time I saw him. This third Neuro isn't bad, but I truly feel I've done the majority of my MS journey alone. The first doctor slapped a diagnosis on me before doing enough study, and the second didn't have time for me at all. More than three years on my own before I found a doctor who would listen.

I frequently wish it would have been the tumor they originally thought it might be. If it had been, and been excised, perhaps my life would have gone on as it was before. Perhaps the headache would be gone, the headache that crawled into my skull and has not left, nor given me one single minute of painless peace in the last few years. I don't know if it has anything to do with the MS, but it roughly coincides with its timing and is here, always here, only varying in intensity but never fully going away.

I'm terrified. I have no one I can really tell how terrified I am. No one that can hear it, accept it, or truly understand it. Family might try, but they want to put a happy face on it and see the bright side. Friends can't bear the weight of the burden of my pain, and it scares them all away if I try, so I don't. My husband does what he can, but he has yet to even begin to understand.

I'm terrified of this disease eating holes in my brain. Lesions eating away at who I am, what I am, changing me- and not for the better.

And so I have to put on a mask and be 'just fine'. I'm just fine, even when I lose words and/or am unable to speak clearly. I'm just fine, even when my brain isn't sure where the ground is and I need assistance walking. I'm just fine, even when I have double vision so bad I can barely see. I'm just fine, even when my permanent headache is so bad that I can barely open my eyes. I'm just fine, because no one I know can handle it when I'm not. I'm just fine, even when I'm not fine at all.

Thank you for sharing. This post drilled into my heart, and even though I'm crying, it's in relief. Relief at feeling less alone.

Shannon, thank you so much for your very heartfelt and eloquent comments, which express feelings that I think are universal in the patient experience. I can completely commiserate with your exasperation at some of the neurologists you've encountered, as your experiences mirror many of my own. Like you, it took me a couple of tries to find a Dr. who seemed worthy of working with.

I also understand your wish that instead of MS a tumor had been found. At least when dealing with a tumor a definite course of action can be arrived at, and the possibility exists of a return to "normal" life. It's testament to how horrible and insidious a disease MS is that its victims would actually hope for a tumor.

I'm so sorry that you're dealing with all of the terror and fear that you expressed so well, but I'm glad you have at least found some comfort in my post. It's incredibly difficult to always put up a brave front, keeping up a façade for the sake of others. Often, though, that façade serves us as well, as sometimes the only way to be brave is to act brave. We often can surprise ourselves by tapping into founts of strength we didn't know we had.

Shannon - we have many similarities.Like you, I've followed this blog for quite some time without comment. I simply love reading Marc's insights.

Like you, I have a persistent headache the past 7 months that nothing touches. My MS diagnosis was May 15, 2009. I have no idea what's causing it or whether it's even related to my MS, but nothing (and I do mean nothing) gets rid of it. It is always there.

Like you, I find that my neurologist (who has the highest of recommendations from many people) doesn't have much time for me. My February visit was particularly frustrating. He is a specialist and my appointment has been on the books for a while, so there is no surprise that he will see me in his office on X day at X time ... YET, he is never prepared. He sits, reviewing my file in front of me, then runs through the usual perfunctory gait/reflex/L'Hermitte's/etc super fast, scripts me out for the next MRI and bloodwork needs and is gone. Same scenario every time I've seen him in the last three years. When I bring up new issues or have questions, he seems clearly annoyed and has twice actually waved me off. I hate the thought of having to find a new neurologist but would definitely welcome the opportunity to find one who wants to work with me.

I applaud you for changing doctors. I need to do that. I think you've inspired me to finally be proactive on that front.

And please -- if you have any updates on your headache, would you post them?

It's tough to know about what MS is doing to you. I’d like to share this MS research page with you. It notes that the cause of MS may be from bad chemistries occurring in the gut that affect the entire vascular, microbial, immune, and neurological systems. Take a look here http://nubiome.com/blog/cutting-edge-multiple-sclerosis-research/ .

A shortcoming of medical research so far is that each branch of medicine (neurology, immunology, cardiology, etc.) is often compartmentalized into silos with little cross-communication. From these MS discoveries discussed on the page, it shows that scientists need to look outside the central nervous system to find the root causes and therapies of the “incurable” neurological diseases. The lack of this cross-pollenating activity is one of many reasons why MS and other neurological conditions have not yet been cured. However, this new announcement will surely accelerate new research and treatments for MS. For the researchers who pay attention to the evidence, it will have an impact on reaching the cure.

You are spot on when you say that the compartmentalization of medicine has hindered research into many different conditions, not only multiple sclerosis. Medicine has in effect been divided up into feifdoms, with each specialty lording over its own group of diseases. Because of this, it's very difficult to shift the paradigm, as is so blatantly illustrated with the uproar over CCSVI.

I do believe there is a rising call for interdisciplinary cooperation, even amongst the physicians themselves. Certainly, we should expect physicians to cooperate towards a common goal, but we are dealing with folks with extremely large egos, whose careers could be on the line. It's easier to stick with the status quo then stick your neck out and make waves.

The slow but steady decline in my physical condition over twenty years has helped me avoid the acute feeling of fear. I have, instead, taken on bad coping strategies, a selfish persona and gradual acceptance of loss. Very hard to realize it was happening nor how it impacted my relationships and personality. I have come to hate that as much as anything else.

Well, they say the key to correcting the problem is acknowledging it, so it would seem you're on your way to becoming a better you. Something tells me you haven't been quite the right bastard you may think you've been, as self recrimination also seems to be part of the disease process. Let's face it, watching yourself decline is a mind warping experience; I'd venture to bet that even Gandhi might display a streak of selfishness put in the same circumstances.

I live in the land of denial. I don't pretend otherwise other than to note a very keen sense of the value of time. I find this is the hardest thing to convey to those who still feel the immortality which only comes with the illusion of health.

I find myself constantly saying, "what did you do today when you felt well? What are you going to do tomorrow?"

I too have grown some what disillusioned by the research being performed. There is so much information out there already, but so few seem interested in putting it together to make it meaningful. I'm not talking about cures. I'm talking about treatments for the conditions caused by MS. We may not be able to cure it yet, but surely we can treat it better.

I share your frustrations in trying to "enlighten" those still blessed with the illusion of health, as you so aptly put it. Does a person have to set themselves on fire to know that self immolation might not be a great idea? Shouldn't a living example suffice?

As for research and advancements in treating MS and its ancillary conditions, don't ever forget that lots of people are making lots of money under the current conditions. Not that there is a conscious effort to stymie advancement, but the subtly corrosive effect of high finance does come into play.

Dear Marc, thank you for all your posts that so truly and precisely describe the feelings and experiences MS brings about. My greatest fear now is looking at my children (8 and 10) and thinking what the future has in store for them with myself (body and mind) being very slowly but inevitably eaten away by the "shark" inside me and knowing (by the 16-year experience) it will never ease off on me. Best regards and sorry for my broken English.

I think the wonder of children is that they see the person inside, not the broken shell. Not that your condition will ever be a thing of joy for your children, but watching your valiant fight against it surely will teach them some valuable lessons, and engender in them compassion and respect for those who occasionally need a helping hand.

Awesome post, I wrote a poem about fear awile back. On every level I learn more from bloggers than my drs. I cried this week at my neuro...Scared to death and theyshuffled me out, I felt myself breaking, screaming and crying inside. With no alone time to break down, soldiering on as a normal mommy with something. Terribly wrong with my bod. Hugs Olivia

All I can say, Olivia, is that you're not alone. Feeling fear in the face of this illness is only normal. You've had the very foundations of your life torn out from under you, give yourself time to process and adjust. I think you'll find that your much stronger than you are imagine…

Reading all your thoughts always gives me so much insight into what the love of my life is dealing with. He was diagnosed with Primary Progressive MS five years ago. Words can not express my respect for his strength and courage, and for the strength and courage of anyone suffering with this insidious disease.

Thanks for sticking by your love, far too many abandoned their partners when the illness reaches a stage they simply cannot handle. The support of loved ones is vital for those dealing with this or any debilitating illness.

I wanted to ask you how much your diet plays a role in how you feel day to day, and I wasn't sure where to ask you.. and I wondered if you've ever tried becoming a fruititarian/simple leafy green eater.. and more importantly if you've ever tried lengthy water-only fasting for healing..? this is my latest pursuit in trying to fight my rrms, and so far the diet part is helping a lot.. I've yet to experience the fasting, but it looks to hold great promise.. are you finding any new treatments, or are you posting elsewhere about this kind of info... I may just need to read more here..?thank you for your great writing... all the best, keith

I'm honestly not sure how much diet plays in my day-to-day fluctuations. I have tried various diets during the course of my illness, but none has really seemed to have any effect one way or the other. These days I'm looking into the paleo diet, as many have reported its anti-inflammatory effects are very beneficial for those suffering from MS and a variety of other illnesses…

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...